What Can Be Done to Improve Outcomes for Caregivers of People With Serious Illness?

Introduction and Scope of the Problem

Caregivers provide on a daily basis assistance with one or more activities of daily living for a person who is older, sick, or disabled. Care recipients are people with serious illnesses who have difficulty managing activities of daily living without assistance. Informal caregivers are family members (e.g., spouses, adult children) or friends who provide unpaid assistance with such activities as bathing, medication management, meal preparation, and transportation. Paid caregivers provide assistance with activities of daily living and can work for agencies or be identified through social networks. Formal caregivers are professionals such as medical providers, nurses, social workers, and home health aides who provide medical, social service, or long-term care. Caregiving needs are influenced by the type and stage of illness, relationship, and physical distance between the caregiver and care recipient; racial, ethnic, and cultural issues; and rural versus urban settings. A serious illness is a health condition that carries a high risk of mortality and either negatively impacts a person’s daily functioning and quality of life or excessively strains their caregivers. The majority of people with serious illnesses are not in the last year of life; thus serious illnesses can influence quality of life across the illness trajectory.

Historically, family or informal caregivers have been “invisible,” largely unidentified and with underreported needs. Identifying people with serious illnesses is a critical step toward improving health care for them and for their caregivers. The focus of serious illness care has been expanded from the patient to the patient and family as the unit of care. Utilizing ICD codes to identify people with severe medical conditions has been proposed for routine measurement of function which can lead to assessment of quality of life and caregiver strain while targeting palliative care services and improving outcomes.

Estimates indicate that 44 million Americans provide 37 billion hours of unpaid care annually to family members and friends. In 2020, 5.8 million Americans over age 65 had been diagnosed with Alzheimer’s disease; that number is projected to grow to 13.8 million by 2050. As the population of adults who are over age 65 continues to increase in number, the number of caregivers needed will increase. Yet, projections also estimate a decrease in the available number of informal caregivers as older adults continue to live longer and population growth slows. Demographic changes signal the need to consider the impact of serious illness on caregivers.

Relevant Background

People with serious illnesses and their caregivers face numerous ongoing stressors across the disease trajectory. However, more is known about factors that improve patients’ quality of life near death than those that improve caregivers’ experiences. Common stressors for caregivers include disease management; emotional, social, physical, financial, and family challenges; and caregiver burden. Reciprocally, both care recipients and caregivers face challenges in coping with anticipatory grief, anxiety, depression, management of preexisting health conditions, mental health issues, and possible substance use. These stressors can affect mood, cognitive function, interpersonal relationships, and medical decision making—seriously undermining coping and resilience while eroding well-being and quality of life. Because each person and family system are unique, their response and adaptation to the challenges of living with serious illness are influenced by multiple factors rooted in personal history and psychosocial and cultural context, which may also include experiences of discrimination, structural racism, inequality, poverty, and immigration status.

Caregiving for someone who has a serious illness has been found to yield both benefits and burdens. People who care for a seriously ill family member or friend can benefit psychologically, emotionally, and socially from the experience. Previous studies have found that caregiving increases self-confidence, makes caregivers feel closer to their ill family member or friend, and gives peace of mind that their family member or friend is receiving quality care. Caregiving can also create emotional, physical, and financial strains. Financial strain results when a care recipient’s needs require caregivers to leave a job or decrease their hours. Other sources of financial strain are the costs of paid assistance, medications, and out-of-pocket expenses such as transportation to medical appointments. Older Black and Hispanic adults report more chronic stress than those who are White and have been found to be two to three times more likely to experience financial and housing-related strain.

Reducing caregiver distress, encouraging communication, and improving quality of death are important targets of caregiver-focused interventions. Families report worsened physical and mental health and more hospitalizations following a loved one’s death when intensive, life-sustaining treatments were performed at the end of life. Predictors of a bereaved caregiver’s well-being include the caregiver’s health and mental health before the death, religiosity, preparedness for the death, quality of the seriously ill person’s life in the last week, use of life-prolonging care, and site of care at the time of death. Scales that measure caregiver burden, stress, and grief may be useful for the assessment of distress so as to modify outcomes for caregivers of their patients with serious illness. Examples include the Marwit Meuser Caregiver Grief Inventory form (Alzheimer’s disease), Caregiver Hassles Scale (Alzheimer’s disease), Zarit Burden Interview, and Caregiver Burden Inventory.

Caregivers are often called on to serve as surrogate decision makers for people with serious illnesses. Numerous complications can emerge: feeling unprepared for difficult conversations and decisions, uncertainty, feeling the impact of their choices, decisional conflict (wishing for further treatment when a patient does not), emotional distress, and family conflict. Caregivers who become surrogate decision makers, have not had conversations about a care recipient’s wishes, and have limited knowledge of an illness/prognosis face complicated end-of-life decision making. Discussing emotionally difficult care choices, dependence, and dying while facing the need for increasingly complex care can also create decisional conflict. The events of an illness can change perspectives, and some people with serious illness defer to surrogates even when decisions contradict previously stated preferences. Surrogate decision makers have been found to incorrectly assess a care recipient’s wishes and apply them inconsistently. Providers who encounter family members in disagreement or who are uncertain, anxious, and afraid have the opportunity to initiate important conversations that can influence how a family adapts to the death and bereavement.

Bereavement-related regret has been defined as wishing that some action had been taken—or not taken—before the death. Unfinished business has been defined as lingering postloss regrets, unresolved conflicts, and/or a general sense that something was left unsaid or undone in the lost relationship. Unfinished business occurs more frequently with immediate family and friends and in cases of a sudden and violent death of loved ones, including from sudden natural causes (e.g., COVID-19), accidents, suicide, and homicide, compared to those who lost someone to natural, anticipated causes. Both forms of unresolved issues are associated with greater complications in the grieving process. The presence of unfinished business is strongly related to complicated grief in bereavement.

Race, ethnicity, and culture influence both the experience and outcomes of caregiving in serious illness. Many possible issues may influence provider–family interactions including issues of trust, fear of provider abandonment, and perceived or actual bias and stereotyping in the context of a family’s history with previous health care providers. Racial differences have been found to be central in patient–family–provider communication, access to information about symptom management, treatment options, comprehension of medical language, and the need for emotional and psychosocial support. Every patient–provider encounter is cross-cultural because it involves communication and negotiation among the cultures of (1) medicine, (2) the medical system, (3) the patient and family, and (4) the provider(s). Priorities and values may clash. Spiritual, religious, and existential aspects of care have been defined as part of palliative care and measures have been developed for this domain.